Death and all his enemies

Yesterday I went to have my scalp clips removed in the MIU, and saw my old Dartmoor Rescue mentor J who’s a nurse there. While the MIU student removed the clips very professionally and with little in the way of discomfort, I explained the two main options of what my cancer might be (a GBM4 or a metastasis from an unknown primary), and about the physical weakness I have now, the ways I’d tried to carry on being that physically strong person I’d been for most of my life. Now I’m not. I haven’t been for months and months. I told her how I’d tried to find ways of getting over it, the I must lose all this weight I’ve gained, I must push it up hills instead of giving in and ambling, I must get fitter and get to grips with my increasingly fragile mental state.

The acknowledgement that I’ve been feeling this way because I have cancer is a momentous one that affects me in so many ways. It means this is not anything I can overcome through physical effort or force of will. As J pointed out it’s purely about keeping my body as well as I can for the treatment, I can’t get fit. And my mind is aligned by blogging.

Yesterday I walked around the small beech banked area of Plaisterdown with Sausage the dog formerly known as Bun. I guess it’s half a mile, and it took me a good 20 minutes. I tried to engage my core and drop my shoulders, but I wasn’t up to arm swinging. As I moved I felt loss rather than gain in energy; the feel of mizzle seeping through my limbs to the ground, or the final dusting of glitter dropping from a Christmas card on twelfth night.

I’m weak from the op I know, but there’s not a huge difference from beforehand. I have medication in Kepra (last dose this morning) that makes me dull and tired, and the steroids that have blown my face up to the size of Jupiter and my feet and ankles to cushions, and blurred my vision. But I’m fundamentally weak.

I don’t need to be told by anyone that I’m strong and positive, I don’t need to be buoyed by well-meant words. I need to be realistic, until I find out for sure what treatment options I have and whether the potential benefits will outweigh the side effects. Yet I still like positive thoughts. One more cognitive dissonance. I spoke last eve to Kernow Stef who’s been sans broadband thanks to a house move. She likes to send me waves of positives because we usually swim in the sea. Last year we met at Whitsand and were playing in some quite poky surf, where she suggested taking the wave on backwards; as I leapt up it hit me in the back of the head and shoulders, and positively smacked me face-first into the foaming water and then the sand. That’s the danger with positive waves.

Death is something we fight against because our culture doesn’t understand it. Camille Paglia (a controversial but always interesting woman) makes an excellent argument that, through banishing birth and death to masculine, clinical atmospheres like hospitals (they work, she says, in Apollonian ejaculatory straight lines) we have disengaged with the feminine core of life and of nature, the blood and guts and circularity of sex and birth and death, and the rounded, unbounded bodies of women. So we reject death, fear it, try to control and master it – and our bodies. In my experience you sometimes have to allow death to happen, and I have been present at deaths from a variety of causes where the person has fought, struggled, and not gone gentle into that good night. Others have just slipped away, and some were killed with no chance to do anything and probably no more than a split-second realisation that this is the end.

I’ve resuscitated people in their 80s and 90s whose lives are not what I’d call a life. How many conversations I’ve had over my years as a paramedic with frail, pained elderly people who want nothing more than to slip away. I wish they’d let me go… Usually they suffer deep loneliness, fear, pain, falls. It’s most often a fall that results in an ambulance visit, if only to get them up and check them over. Usually there’s all sorts going on. They tell you their woes. It’s one of the more sustained emotionally difficult parts of a paramedic’s job, dealing with such misery and hopelessness because there really is no solution but blessed death.

Then, later on when they do finally die despite the long lists of medications that regulate their heart failure, and their blood pressure, and their diabetes, and their pain, and their dementia, we are sent to perform advanced life support, to attempt to save them. From what? More of the prolonged death to which modern medicine has subjected them, usually without any meaningful discussion of choice (how about if I give you this drug you might stay alive for another couple of years, or you could not take it and this is probably what’ll happen?) That drive to improve longevity and give people a healthy, fulfilling retirement has turned many lives into a kind of purgatory of waiting for it to be over.

Resuscitation starts with taking what are called heroic measures to save a life. A paramedic’s job is essentially in this context to keep the patient oxygenated and perfused, and it’s the kind of drama that everyone thinks paramedics engage in all the time. When I worked in Newton Abbot I was doing maybe 20 a year, less in other areas. So it starts with the airway and breathing, then involves such interventions as intravenous or intra-osseous fluids to maintain blood pressure, followed by CPR as the lungs and heart give out. Of course you can arrive at any point in that decline, or you can precipitate an arrest by moving a dying person from their bed to take them to the hospital. If the person is fit and was relatively healthy, then a successful resuscitation is a marvel. If they were dying of old age or an incurable disease, it’s an utter travesty, and a pointless one. We do it because we can.

Advanced life support is now so well drilled that we get people back quite often. The insult to the brain and body is huge, and the survival rate of an out of hospital cardiac arrest is much smaller than you’d imagine, especially one where the patient is neurologically intact. Often, they weren’t neurologically intact when they died, and were languishing in a nursing home with dementia. Why on earth are we even considering resuscitation? There are many moves afoot to try to prevent this kind of thing, to allow a natural death, but the overstretched GP service which plays a key role here is fighting a losing battle with cuts and 10 minute appointments, especially in areas like the southwest where the retired population is disproportionately large and where resources have not been increased in proportion to house building and retirement complexes. It’s certainly not an issue to cover in one of Jeremy Hunt’s 60 second on-line appointments. How do you deal with that in even 10 minutes? Add in the Daily Mail and co, and you have a minefield of misinformation, a blurring of lines between euthanasia, the killing of elderly people without their consent, and CPR as some kind of miracle treatment to sustain life. It’s an understandably emotional bog of fear and horror at the thought of a natural and timely death that makes no reference to evidence or genuine humanity. The Liverpool Care Pathway fell foul of that. There were most certainly communications issues and mistakes in some cases; yet we all love a hospice which specialises in exactly that kind of care for terminally ill people, but we can’t allow our elderly dying to be supported and leave the world calmly because somehow we think we’re murdering them unless we treat each stage in their decline as a medical emergency. They’re suffering alright, but not in the way you think.

The oldest person I’ve been forced to perform advanced life support on was 96, and I know of one that ran the full time aged 101. Give him a chance, he’s a fighter… is the kind of thing people who ask you to do everything you can will say. A chance? At what?

The majority of the cardiac arrests I performed Advanced Life Support (ALS) on were in their 70s and 80s, with a fair few in their 90s, and some much younger but with advanced COPD and cardiovascular disease, or complications from diabetes such as limb amputations that tell you their circulatory system isn’t functioning. You do get those sudden arrests in younger people, from MIs, or drug overdoses, sometimes strokes, sometimes with no obvious cause. Those are the ones that it’s for, the ones any doctor will work flat out to get back (doctors have the power to call time on cardiac arrests that we don’t), although the outcome might not be good. They’re young, they still have lives to live. That’s what we do the job for and there’s no greater reward than receiving a card or a visit from someone you brought back, especially when you thought they were toast. These have a reversible cause. Old age and terminal illness are not reversible.

Quite often, you’d get a fit octogenarian back, and they’ll be apparently okay, but I still wouldn’t like to be them; a sudden death in your 80s sounds like a dream to me from where I’m sitting. Resuscitation and a prolonged death through frailty and a mass of comorbidities does not. We’re supposed to die. If we don’t then we need to stop reproducing, and perhaps all retire to Teignmouth with squads of elderly paramedics (retirement age soon to be 70) resuscitating each other. I’m simplifying a complex argument to explain my current thought processes about my own situation (you can’t ever draw a line of course) and as always, communication and debate is what’s needed, with individuals and their families and friends. One to expand on later, and to consider in depth, without hysteria.

A resuscitation is not pretty. It’s not like the ones you see on telly. Usually there are body fluids from every orifice, stinking and spewing. Vomiting can be intractable, and continue to well as you compress the chest and clear the airway, suctioning frantically, trying to drain positionally, dashing to intubate if you can see at all. Shit and piss seep, so you kneel in it unless you squat, and then your muscles start to scream. There’s a pervasive scent of death. Strange gasps and squeaks; sometimes a spooky sigh; the thumps of good, deep chest compressions; cracks as rib cartilage, and sometimes ribs themselves, snap under the pressure. The sensation through your hands is disturbing, but you push through, compressing at 100 a minute, about 5cm down each time; you begin to sweat and pant after a couple of minutes, need to swap over to keep the effective compressions going.

You bag your patient, grip the padded mask to the face that was recently animated. Sometimes you need help to pull the slack skin of the cheeks over the mask to get a seal to oxygenate them before inserting an endotracheal or laryngeal mask airway. Your patient’s face won’t look alive, and it’s oddly coloured; maybe blue-grey, or tinged with purple around the lips and nose, or the colour and texture of a church candle. It depends on how long the down time is, or whether or not you’ve got a decent airway and chest compressions going. You might have no idea what this person was like, or you might know them well as one of your regulars, or someone from the area where you work that was a family friend. They’re dead cold.

You shock to re-establish an organised heart rhythm, not to restart the heart. In fact, the shock stuns the myocardial cells, all of which are firing away individually but out of synch or too fast to allow the heart to pump blood. You don’t, as they do on TV, shock asystole, which means a flat line – there is no electrical activity at all. That gets adrenaline only, via an intravenous cannula (IV), or maybe from an intraosseous cannula drilled into the humeral head or the tibial plateau.

Anyone who dies at that age is dead. Bring them back, resurrect, you prolong their death from frailty and old age. But somehow we’ve come to the point where too many people consider it a patient choice rather than a completely inappropriate and unjustifiable set of actions, which are not based on evidence in such cases. And we are supposed to practise based on evidence, not vague whims commensurate with the choice of 300 types of breakfast cereal in Tescos.

To give a human being who’s had a long life the dignity of a peaceful death is not giving up on them. I felt physically sick as I crushed the chest of a frail, failing 96 year old and her breast tissue sank beneath the ribs, which fractured and detached from her sternum as we continued chest compressions. Her chest was like a bird’s, protruding sternum and each rib curving back. She was in a nursing home. We managed to call a halt on that one after fifteen minutes or so, via the local GP. But paramedics have been called in front of the HCPC for making such decisions. Had we ‘got her back’ we’d have condemned her to yet more un-death, that vampiric existence of frailty and feeling, probably, the way I feel now but in spades.

I’ve had families overrule a DNAR for someone who’s got so many problems they’re in a living hell, and we’ve had to do our best to resuscitate them too. I’ve been asked to take many dying patients into a main hospital from a community hospital because nobody’s managed to have the DNAR conversation. So I have to resuscitate up to the point of cardiac arrest, at which point I can stop because the doctor has decided that CPR is not appropriate, while a trip to the ED is. If that involves inserting an intra-osseous cannula into the humeral head of a dying nonagenarian who still feels pain, you can’t tell me that’s okay; it’s torture. To flush an IO causes severe pain, screaming pain. In that case I called the ED consultant and he overruled the other doctor whose instructions I had been ordered to follow, before calling the doctor and making his feelings clear. But I could have just done it. And some people would argue I should have.

Then there’s the flip side, the way we run our social care mostly for profit. It’s the carers, usually paid below the minimum thanks to no paid travelling, and tight, fifteen minute slots, who bear the brunt. Once I found an 18 year old who’d overrun on her slot by an hour already, and who’d been told by her manager to leave her elderly charge who’d wet himself when he fell, because he’d had his time when she picked him up and she wouldn’t get paid. She’d stayed anyway, changed him and washed him, then realised he wasn’t right and called me. Bless her heart and a pox on her manager. Patient care is at the heart of everything we do, allegedly. That one was passed via the GP to social services. We treat our elderly like packages or pets.

We were once called by the police who’d broken in on a concern for welfare to an elderly woman who’d grown into her chair; ammonia-soaked flesh literally made our eyes water as we entered. She was waiting to die. She’d dispensed with her social care such as it was, which is her right. Someone was coming and feeding her, doing the odd bit of washing. But mostly she sat in her own excrement and ate cake, waiting to die. We managed to persuade her that we should wash her and change her clothes, swap the chair cushion. We built it up with inco pads, called the local community nurse who appeared at once and tended to her. We got four visits a day from carers, in carefully-timed fifteen minute slots of course, there’s a profit to be made here. Sometimes she’d let them in, sometimes she’d throw things at them and try to hit them. She wouldn’t let a doctor in the house. She lived around another two years, and the last time I saw her she was clearly dying but wouldn’t let me in. I wanted to make her comfortable, but she hadn’t been comfortable for years, only death would end her suffering.

When you hold the hand of the dementia patient being sent from his community hospital bed where he’s dying to ‘investigate’ gastric bleeding at 4am, and tell him where he is for the 25th time, then when he asks tell him that no you’re not staying with him, you’re leaving him here with a nice nurse, whom you know doesn’t have time to sit with him, and watch the panic in his eyes, it’s pretty upsetting.

You can’t ever say that’s in the best interests of the human being whose death ought to be a matter of comfort, management of pain and distress, and familiar faces in a familiar place. We need to fund social care, we need to address loneliness, and the management and care of dementia. We absolutely should be allowing a natural death in the vast majority of these cases, not performing resuscitation and ALS.

I hope I can make the decision to let death come when it’s time; that’s likely to be sooner than later for me. I don’t want to fight it in a hopeless attempt to stay here for someone else’s concept of life at all costs, when life for me is such a matter of experiencing the moment, taking risks, loving the adventure. You can keep a shell of a person painfully and horribly alive with a cocktail of medications for years, or you can decide to stop treating, to allow some dignity. That’s where the choice should lie; risking that wild swim into huge swell, the one where you drop off the back of a wave and are sandwiched between it and the rebound, or perching on a canvas chair in a car park on the moors, with the car door open in case something wild or dangerous happens so you can safely escape back to so-called civilisation.

Couldn’t agree more Lynne. My mother had a DNER, which meant she wasn’t resuscitated after her last fall – a tough call for my father, but what she wanted. Most people are too scared to have that conversation though.

I know we’ve had the ‘quality over quantity’ conversation re life a few times, and I agree with everything you’ve said Lynne. I know that’s what I’d be wanting in those situations. It doesn’t make me any happier to be agrreing with you in this particular case tho’….. Cxxx

Couldn’t agree more Lynne. My mother had a DNER in place, so she was not resuscitated after her last fall – a tough decision for my father, but very much what she wanted. I think a lot of people are scared to have that conversation though.

It seems we share similar opinions yet again. I am an ECSW in the south east. I can relate to every word you said about ALS. There is just so little point. I see the “lives” some people I am begged/expected to save and I just feel that I am doing the wrong thing by even trying. I wrote my own blog about death: Elephant in the room. http://themadnessthatismylife.com/2015/02/02/elephant-in-the-room/

Thank you, I read your blog and it’s spot on. This post certainly hit home for people who work in this area, but too many have no idea.
There are lots of efforts to stop this sort of thing happening in the SW and our trust is incredibly proactive, because of both the high retired population and the vast rural area we cover.
But it’s so dependent on where you are, and often on individuals, then when you add in families and cuts it can become overwhelming. In the rural areas cover is sparse. You still get people with complex medical conditions moving to the countryside to retire and calling 999 and expecting an ambulance to magic them to hospital in the 10 mins it took in Birmingham or London too – that’s neither fair nor sensible! I even know of people at the top of transplant lists who’ve done it.

Discussion. Conversation. The challenging of outmoded beliefs, values and assumptions around death and dying. Rethinking what we’d like for our own death.

All so important – and so difficult when met with resistance. Ultimate denial of our own (inevitable) mortality? Giving space to death within our living is surely more powerful. (A good life and a good death: companiable, desirable bookends.)

I’m no fan of Paglia, from the little I’ve read of her writings; seen of her interview style. There’s challenge, there’s criticism – and then there’s out-and-out condemnation and insult. Frustrating that such an intellectual, and potential good for women, should choose attack as a communication tool – which commonly serves to disenfranchise the very people she needs onside.

Thanks Gilly.
Paglia is inflammatory, but that particular book contained huge enlightenments for me. I think she’s right on this, although I have done serious issues with some of her other pronouncements. It’s a significant part of the debate.
Lots of feedback and more blogs on the topic to follow for sure. Xxx

My uncle died this morning. Dear dad to my four cousins, and large part of my happy childhood memories of messing about on my favourite South Devon beaches. His death came quickly after a fall/stroke or stroke/fall – we may never know. Less than 24hrs later he is gone.

I’ve trawled back through your blog specifically to read this post. It’s made some sense of today, and makes me more at ease about the coming months/years for my own elderly, deteriorating father.

So sorry Ju, and very happy to hear that your uncle’s was a quick death. I think it’s so much easier for the person dying, but so much more of a shock for those left behind.
So glad you can think about the context even in the throes of such raw grief.
Much love to you and your family. xx

Lynne, I have been thinking about this and there is more wisdom in this single post than most people manage in an entire blog. In many respects we have forgotten the natural way of things in being human. We no longer live in extended families who experience birth and death at home and this came home to me when my children were born and I got books out of the library to find out what to do as I had last spent any length of time in a family with very young children, was when I was one. We see death through the lens of medical soap operas, and people do not have the conversations they should which so often results in some of those distressing situations you describe. You say, ” a sudden death in your 80s sounds like a dream to me from where I’m sitting”. My great uncle worked into his 80s tending his nursery, and one day had a fatal heart attack walking up a hill. He has always been my model of death. However, you generally don’t get to choose, but I know what I don’t want and consider it my responsibility to make this known and spare my family getting stuck in that abyss that you so well describe.

Thanks Micheal, glad to know it made you think . There are many people working on this at the moment, and the conversation is starting to be wider, which has to be the aim.
As you say it’s very diffiult when mixed with all the soap drama, and the horrible emotional entanglements of dealing with suffering in those you love.
That separation of death from the everyday world is the most difficult thing to deal with I think. I’ve been out with paramedic students who’ve never seen a dead person. To go from that to suddenly seeing a person die is quite a leap, even when you don’t know them.
If you’re on Twitter, have a look at #dyingmatters